Waiting for science and starved of nourishment

This is a raw, yet heart-warming story about the power of food to impact how we feel. In telling how she used diet to help her son cope with autism, OCD and ADHD and also manage her own struggles with Fibromyalgia, Aless makes a powerful statement. She makes a direct connection between the food we eat and the incidence of chronic disease and how traditional medicine is woefully incapable of helping parents and individuals navigate the nuances of the relationship between what we eat and how we feel. in response to a gaping need in the market, Aless has launched The Functional Foods Co – a wonderful company dedicated to providing sensational, high-quality, low-FODMAP foods that will help us all re-connect our bodies and our minds. Her fabulous products are now listed on the Pruv Emporium and can be found here.

Here, in her own words, is Aless’s Story.

Introduction

Getting the nourishment we need has never been so complex as it is today. We can talk about food shortage and poverty, but this has existed for as long as we humans have lived, yet even 100 years ago, food was food – medicinal, nourishing, real, pure, clean. Our grandparents would not recognise lots of the foods that we eat today. This is because today’s food is made by powerful companies who are driven by profits.

The present issues of childhood obesity, lifestyle related diseases, obese but malnourished children, fussy eaters, allergies and food intolerance, anorexia and other eating disorders, diabetes, IBS, coeliac or Crohns Disease are all the result either of years of eating foods that do not suit us or exposure to environmental toxins that have affected us and our children (and which will continue to impact generations to come).

To this list of chronic diseases we are subject to today, I will surely add Autism and ADHD.

The issue is complicated by the fact that the current health care system is not designed to manage this epidemic of complex, food-related issues (modern medicine has been designed around overcoming physical trauma and fighting pathological disease, rather than dealing with the long-term, low-grade chronic diseases caused by today’s lifestyle). No progress has been made within our medical services to educate enough doctors and nurses in the important subjects of nutrition, behaviour, mental health, addiction, diet and lifestyle issues.

So, as individuals living in Western culture, with the focus on cheap, convenient food, governments (falsely) advising us to consume more grains, fast food being made available in schools, and nutritional advice coming from the most unqualified agencies like GP’s and TV, how are we supposed to know and understand that what we are feeding ourselves and our children is making us all sick, addicted and craving for more?

I became aware of the connection between what we eat and our physical and neurological health through my own health issues, but more importantly through the health of my child who is autistic. Autism is very much on the increase at the moment with more and more children being born and diagnosed with the condition.

As a parent, I am deeply concerned about the cause and effect behind this epidemic and have chosen to share my story as I do not see any urgency from the professions in regard to either understanding the underlying causes of autism or helping people manage the situation sensibly, with practical advice around diet and lifestyle.

In the case of my son, his autism is expressed in a variety of ways.

Neurology and rewiring the brain.

If I had known what I know now, that Autism is simply a delay in neurological development, meaning that the brain is not fully wired, I would have known how to help him sooner. Instead, I trusted the medical professional and waited way too long before I intervened.

As a tiny boy, he had huge problems just co-ordinating the process of eating. Only because I had been a young carer to my grandmother, who had been paralysed following a stroke, and recalled some of the issues she had and the exercises we did with her, was I able to apply that learning to my son. We used mirrors, ice cubes, brushes, hot and cold food, spices and zest to stimulate his mouth.

These days, my son can chew, swallow, speak, choke, vomit, sing, and use his tongue appropriately, but I have had to make this happen entirely on my own. This massive issue was not picked up when he was a baby, even when he wasn’t able to feed properly, and there was no help or support given on how to help him. Today, with all my practical intervention, his taste buds are so developed that he can detect any added remedies into his juice. Which is a whole new problem!

Sensory Issues

It was only when I, myself, was diagnosed with Fibromyalgia Syndrome (another condition that is caused by our Western obsession with processed foods and convenience) and experimented with my diet to try and manage the situation that I started to make the connection between my son’s other symptoms and the food he was eating. One of the symptoms that I suffered as part of my Fibromyalgia was brain fog, and once I had worked out that this was caused in large part by gastric distress, I was able to apply that learning to my son as well.

Take, for example his Sensory Processing Disorder, something that is very common in children with autism. Until I worked it out for myself, I had no idea that there was a connection between the health of our gut and our ability to process thoughts, feelings and emotions. By addressing his gut issues I was able to help him immensely to cope with noise sensitivities, tunnel vision, his ability to walk and (such an important issue) his spatial and body awareness. No longer did he need to make himself sick in order to work out where he was in space.

I know now how my diet can affect my ability to tolerate noise, touch, light. So I can relate to how my son and many others must feel. Because I have worked out the link between cause and effect, I can do something about it. For many people, this is not the case, and for autistic children in particular, they have no voice and the only way to express themselves is through their behaviour.

Behaviour

Behaviour is a communication tool and this is not only the case in special needs children – how many times do we as adults use our behaviour to communicate our anger, or happiness? We all have a history of ‘eating our emotions’ or ‘self-soothing our sorrows’ in a pot of ice cream. If we could allow our nonverbal children means of expression, accept their self-stimulating behaviours instead of trying to offer ‘more normal’ ways of coping, if we could participate in intensive interaction with them, showing them that being angry and sad is acceptable, normal and that they are perfectly justified to feel that way…..

If I had known then what I know now, would my son perhaps not have developed OCD and complicated behaviour and rituals around food that we are now struggling with? Would my son trust me and food more if he hadn’t had the horrible 8 years or having food restricted and controlled, of feeling sick and spending his school hours on the toilet?

What I have come to understand is that food affects how we behave. If we are undernourished, our complex, human, brains are the first part of the body to be deprived. If this is the case with everyone, how much more is it so for an autistic child?

It irritates me how often I read that ‘selective diet’, ‘self- restricted diet’, ‘fixation on plain carbs’… how common this is in children with autism. This is normalised as a part of the ASD syndrome, yet it is an issue that can be addressed and eliminated successfully with a simple intervention that no one is prescribing .

We do not ask people with nut allergies to eat nuts and take emergency medication each time they do. But we do expect obese children with premature diabetes to eat carbs and take insulin to manage the consequences. We also expect children with autism to eat food that they react to, suffer gastro distress and the corresponding behavioural problems, and then take medication to treat the behavioural symptoms. It seems that we use drugs to suppress symptoms and then more drugs to mop up the side effects, rather than looking for and dealing with the root cause of the problem. This does not strike me as a recipe for health.

To give you an example, as the result of my son’s problems with eating, he was put on medication that, whilst it stopped him being sick, it made him gain a huge amount of weight and affected his hormonal health to the extent that he started to grow breast tissue at the age of 9. His sensory responses were so impaired that he would eat dirt as he couldn’t taste anything and he became fixated on salt as it helped him to feel what was in his mouth.

The other scientifically approved method on offer, apart from medication was using a feeding tube.

There was no effort spent in analysing the type of food that he could eat without vomiting or impairing his connection with the world. There was no appreciation of the subtle balance at play, just the thought that calories had to be got into him somehow.

Approved by nature and generations of humans – Real food diet

For both my son and I, taking out everything that’s processed, artificial, GMO, E coloured or pre-packed in plastic and foils was the first big step.

We, the parents of children with ASD, all know about the mystery of the GFCF (Gluten Free Cassein Free) diet and how so many parents report big behavioural and sensory improvement in their child after removing gluten and dairy from their diet. To understand how this works, we need to understand that the gut and brain work in close partnership at all times. If we consume food that is not appropriate for us, as individuals, this sets up a chain of reactions that are either immediately, or ultimately, felt in our brains and expressed as depression, anger, confusion or memory issues.

I don’t believe the GFCF diet is necessarily the answer for everyone because I know that all children are different and diet should be tailored to the specific needs of each child. However, since, for many of us, there are no professionals to provide meaningful support and eliminate food groups under supervision, the safest and easiest way forward is to start with the LowFODMAP.

You can read more about the Low FODMAP diet here. Developed by researchers at Monash University in Australia, it works on the assumption that by eliminating all foods that can potentially irritate the gut, you can improve its functionality. This enables the immune system to relax and the gut-brain connection to work smoothly. The good thing is, after the gut is repaired, lots of the foods can be reintroduced.

Addictions

I am sure I am not alone in the conclusion that most of us are addicted to ‘food products’ and our ASD children are not the exception but more likely the ‘rule’ in this case. The similarities in the feedback I receive from parents with regards to the food their child consumes it’s not an accident. Very often the types of foods children are self-restricting themselves to or ‘hooked on’ reflects the symptoms that a medical professional would take into account when diagnosing yeast overgrowth or IBS, coeliac disease or even a parasite infection.

Unfortunately, when our system is out of balance, everyone starts to crave these foods more and more and the only way to break the pattern is to avoid them completely. Not easy for most people, almost impossible for a child on the ASD spectrum. I say ‘almost’ because I did manage to do this with my child.

These days, with a diet that works best for him, the individual that he is, my son is functioning at least as well as can be expected on all levels. He is eating well, he is expressing himself and inter-acting and feeling much happier in himself.

If I had understood from the outset, how important, something as simple as food could be to his cognitive, social and intellectual development, I would have saved both him and me from a lot of distress. I am committed now to sharing this information with as many parents who are in the same boat as possible to help them manage, and give them the tools to cope so that they can dramatically improve the well-being of their child, themselves and their whole family.

As an important part of this, I set up the Functional Foods Company which is dedicated to producing Low FODMAP foods which are not only delicious, appealing and interesting, but which are specifically designed to fill a need for people who have identified or are exploring the connection between what they eat and how they feel. You can experience them for yourselves by following this link!

Is someone you love struggling with autism? Do share you experience by commenting on this post (scroll down) and help us to spread the word about the importance of diet and nutrition in managing this complex and deeply individual issue .

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